Wednesday, 29 June 2011

So today was Dude's first ever school trip. We arrived on time by some miracle and I helped load Dude on to the coach. It was one of my fears that he wouldn't be strapped in properly so I just went to make sure it was done right.

I walked round the side of the school to where the coaches were with Dudes 1:1 The driver was there ready with the side entry lift already down. I went on with him which was quite scary as the wheelchair rolled back abit when I took the brakes off to wheel him onto the coach. The driver clamped down the chair using the clamp points (I was worried he wouldn't bother using the proper clamp points). I had to ask for a seat belt. The driver said to me 'he doesn't need it he has straps on his chair' I had to point out that the harnesses on wheelchairs are not designed as seat belts and that he requires a seat belt like everyone else. He then put the seat belt on Dude.

With Dude safely on the coach I left him to it! Standing beside the coach one of the mums said to me 'we're just having a giggle at the writing on the coach' yes the picture above shows you what we we're laughing at. Turns out this particular company can't spell WHEELCHAIR.

One coach of excited 4 and 5 year olds disappeared round the corner.

They were slightly late coming back. I asked how the trip went and both Dude's 1:1's said 'I wouldn't say it was easy but it was fun! He spent most of the time looking at a map and telling us where to go' I thought 'typical Dude' He did say his best bit was seeing the lions so least he did pay a little attention to where he was.

On the way home Dude told me he liked going on the magic coach. He thought it was great that he could get on the coach with all his friends.

Now that this trip went well and Dude had a great time, I can relax the next time there is a school trip :)

Tuesday, 28 June 2011

Tomorrow will be Dude's first ever school trip and he's going without me.
I'm excited for him because he does EVERYTHING with me.

When 'school trip' was mentioned in a conversation with his teacher, I said to her 'You do realise that there's allot of planning to do when take 'Dude' any where don't you?' She looked shocked at me and asked 'Like what?'
Well first of all they needed to book a wheelchair accessible coach so that he could stay in his chair but be with all the other kids. He can't sit on the standard coach seats or climb the steps. Health and Safety regulations prevents them form lifting him and they would have had to hold him the whole journey, preventing him from slipping down and off the seat.
They also had to look at the venue. It's a local wildlife park that they have chosen. We had been once before and found it nearly impossible to get round but it had just opened and was 2 years ago. The teacher decided that they would go have a look round and plan round parts that weren't accessible.
I told her then that I didn't really want to go as I felt that he needed to go do something without me and be like the other kids. His teacher agreed and said that they had already decided that I didn't need to come after speaking to the Physio that does their moving and handling training. They did originally want me to go but he told them not to make me go as it would be a good break for me.
They identified 3 places in the park that wouldn't be suitable for Dude's wheelchair and checked out the toilets. They told the park that they need to be as close as possible to the entrance as they have a disabled child coming with them. The teacher said she was annoyed at their response of 'its first come first serve with the parking as we are fully booked with coaches' asked whether any of the other coaches had any people with mobility problems they were told no! I've told the teacher I'll send in Dude's blue badge as that may help with the parking problem.

I'm nervous. I'm frightened that they'll bust the wheelchair. I'm scared that the chair won't be clamped right in the bus and that they might have problem's toileting him. I'm also worried he wont get to see anything and he so loves animals. He's desperate to see the Lions and Tigers as Big Cats are his 'thing'.

I'm just praying everything goes smoothly for him and he has a fantastic time. I shall spend the day chewing my nails!

Thursday, 23 June 2011

Dude was 2 weeks off his first birthday when he was diagnosed with Cerebral Palsy. The doctor had said not to expect him to do anything. He started seeing a physio and acquired a standing frame and a corner seat which he was to spend time in everyday. Dude started to open his hands allot more and rolled from side to side better. He was given special boots and I was given exercises to do with him each day. I found his first birthday hard as toys for his age just didn't meet his physical side. I ended up with a ball pit. I thought he would like to lay in it and play with the colourful balls. I didn't realise that play balls were hard to get in January. His father and I split a few weeks after his birthday.

Two months after the start of his physio Dude started proving them Doctors wrong. He started to crawl! He couldn't yet sit but crawling meant he could get around much better than with his commando crawl. It only took a few months before he was whizzing around. He likes to be really close to the T.V. and started holding on to the T.V. table so he was up on his knees. He was 15 months old when he accidentally let go and flopped back down and SAT on his knees. He started to sit more and more although this wasn't a great position to sit in. His physio said it was called the 'w' position and would put strain on his hips and knees. She tried getting him to sit in other positions but he just wasn't stable enough to do it.

At around 18 months Dude started to pull to stand. With him now doing this he was tried with a Kaye walker. His physio thought he might have been to young to master it but not Dude, he walked!

At his check up with his paediatrician when he was 20 months old I pointed out that I thought he was a bit odd. He flapped, rocked, lined things up, had unusual fears, made repetitive noises, couldn't deviate from routine, struggled with noise and crowds and had sudden tantrums over what appeared to be nothing which he couldn't be comforted for. I suspected he may have Autism but the paediatrician literally laughed in my face and said that all kids where like that.

At two and a half years old Dude had his first operation. His legs had become too stiff and were stuck crossed over (scissoring). Nappy changes had become extremely difficult so it was decided that an op to release any tight tendons and to put Botox in his muscles to relax them would be beneficial. This is where we discovered that he doesn't like to wake from General Anaesthetics very well and that he had a high pain thresh hold. It was supposed to be day surgery so out on same day. Dude had other ideas, not waking up so ended up spending time on the ward. When he was released we was given a pain management sheet but Dude didn't need any pain killers. It was very hard to get him to stay still and rest. He just wanted to crawl about like nothing happened. The tendon release worked but the botox didn't. Although he could now open his legs and didn't scissor, he did still have very high tone in his legs. We also saw a gastroenterologist as Dude had problems with his bowels from birth. He was diagnosed as having chronic constipation and had never emptied his bowels properly which resulted in an impaction. He was given Medication to clear him and to have regularly. He was also sent for an op to put a probe in his stomach to asses his reflux that he had from birth. This resulted in another diagnosis of Sever Reflux. He was lucky as only his stomach was damaged but his oesophagus was fine. We visited a neurologist as Dude had started having jerks and it was queried that he might have epilepsy. He had and MRI scan of his brain which showed he had a form of brain damage called Periventricular Leukomalacia (PVL). He had huge holes in the middle of his brain, hardly any white matter and instead of his brain meeting his skull it was jagged all the way round. People often ask me if his brain will get better or if it can be fixed. It can't be fixed. Dude was sent for tests for epilepsy but they came back as normal. Dude was changed from just boots to boots and AFO splints. He Had a hip x-ray that showed his hips were underdeveloped and he didn't have much in the way of sockets.

3 years old and Dude started at nursery. He attends a mainstream school. We've had ups and downs with access and support but we're quite happy where he is. I am concerned though as we have nothing in writing. Kids like Dude normal have care plans, statements excetera so that support levels, education needs, access, equipment and therapies are insured. All Dude has are I.E.P's which cover his toileting and physio. He was given the Autistic Spectrum Disorder (ASD) diagnosis. The Speech Therapist had also picked up on signs that he was ASD and initiated the assessments once he was in school. Dude went for more tests about his jerking which was almost always in his sleep, for floppy episodes where he would lose all muscle tone and couldn't even hold his head up and also for some episodes where he would stop breathing. I was told he had Non-Epileptic Mycolonic Jerks and Sleep Apnoea. They wasn't sure if he has Obstructive or Central Apnoea's though. They didn't know why he kept going floppy. Along with his splints and boots Dude now needed to wear a Lycra suit to support his hips and back.

Because of Dudes floppy do's he needed a wheelchair that would tilt as a fixed back chair just meant he flopped forward or sideways and closed off his airways. Dude only does this a average of 1-2 times a week and as we still didn't know what caused it wheelchair services refused to issue him with a chair that met his needs. To top that the chair they had issued was also unsuitable for me. I dislocate very easily due to Eherlos Danlos Syndrome and the handles on the chair were so low down that they put enough pressure on them to dislocate them severely. I ended up on crutches and couldn't weight bare. I contacted social services as I was desperate for help. I couldn't feed, wash or get Dude up and down the stairs. We had a stair lift fitted but I was unable to even lift him up onto it or onto the silly bath lift that had been fitted. Social services refused to help until I told them I'll get a taxi driver to help me into their office and sit there till they did something and that if anything happens to Dude then its on their heads as I contacted them for help. We got carers for 8 weeks when they suddenly dropped them. In the time we had careres I was assessed by adult services and was placed on there critical level as needing help but they said they don't provide the help I needed which was with housework and cooking. Even meals on wheels had been stopped but if it hadn't they would only provide food for me and not Dude. These were hard days. I did eventually get well enough to do all the things again but still I struggle with the housework and lifting Dude. When we had the ''adaption'' done I had asked if they could please adapt the garden so that Dude had access to it. After a battle they put a ramp down to our front grassed area and a 2 meter by 2 meter playing area. He still doesn't have enough access to the garden to play like the other kids. I cant afford the £6k I was quoted to adapt it so he spends much of his time indoors. We was assessed as needing one night a week over night respite in Feb 10. t still hasn't started as there was moving and handling issues as Dude can not self transfer into a car.

He started reception (foundation 2) last September. He's come on so much since then. I love his current school teacher as she's managed to get him doing things that I thought would never happen. In October we saw his paediatrician for our 6 monthly check up. Dude was still incontinent and I was told not to expect him to be out of nappies any time soon. 4 weeks later and (I have to admit, this was mainly down to school) Dude was out of nappies in the day except for whilst out as public toilets were kind of a nightmare. Hes now out of them totally in the day. I'm so proud of him.

I applied to a charity (which I hated doing) to get Dude a wheelchair that was much more suitable for us both. It was decided that he had mixed tone cerebral palsy and they finally recognised that his whole body was affected by both the high and low tones. The new chair meant that instead of having to just lay there on the sofa, missing out on stuff, he could just be tilted in his chair and still go out even if that was just to go to an appointment or shopping.

This year he had another operation. His legs had become very stiff again and his feet were getting stuck pointing down. He had botox again and serial casting. This meant he was in plaster for 8 weeks but when the last lot came off he had flat feet. He amazed us even more when he decided to walk unaided for the very first time. He now practices lots at home and school so hopefully one day he may get rid of the walking frames for good.

So this is where we are up to now. I'm sure there will be loads more to share with you. I know I haven't shared everything he's achieved or done yet as this post is long enough.

p.s. if you managed to read all of the post, well done and sorry it was so long!

Tuesday, 21 June 2011

I knew from the moment Dude was passed to me that there was something not quiet right. I didn't know what, but his legs looked funny. As if they had been stuck on wrong. His father had told me there's nothing wrong. Doctors and Nurses on the Maternity Ward said that there was nothing wrong.

At his check before we had been discharged his left ear wasn't showing signs of picking up any sound. They had said this was probably fluid and to return in 2 weeks for another hearing test. We went back and sure enough it had been fluid. It had cleared and he passed his check. Phew, I was pleased.

We had several visits from Midwifes and Health Visitors. No-one suggested there maybe any problems with my baby. I still had concerns about his legs. He screamed ALL the time. only stopping if he was swung gently in his moses basket. I had to stop breast feeding him after 4 days because he just had too strong a suck and had caused allot of damage to me. He wasn't getting any milk because he was sucking too hard. I felt awful that I had given up, but we were both crying. Me because I had to feed him and him because he was starving. He started getting jaundice, wasn't really weeing much and was constipated so I knew he HAD to go onto bottles.

He didn't react to things you would expect him to and over reacted to other things. The Midwife did his heal prick test, warning me he may scream. He didn't. there was no reaction. He stayed still in her arms. She joked 'oh your a hard boy. You off for a tattoo next week?' He startled so easy to noise though. A cough, a sneeze, sudden laughter, the hoover, any loud or sudden noise resulted in him throwing his arms back and crying.

At 4 days old his Uncle and Aunt came to see him. They thought it was cool that he could hold his own bottle. He often had his arms tucked up to his face, never unclenched his fists unless he was asleep. All they had done was prop the bottle up with him in this position.

3 weeks old and I had him at the doctors already. He seamed to stop breathing whilst he was feeding. I was also concerned about his bowels as it seamed quite difficult for him to go. I was told to give him more water ( I was already giving him lots). Dude spewed whilst in there and the doctor asked if he had just had a bottle. I told him it was a good hour ago. He asked if he did that lots? He did so he said that he wasn't stopping breathing, he was breath holding because he had reflux. We was prescribed gaviscon to put in his bottles. This kid was smart though. He refused ever bottle with the gaviscon in it.

At his 8 week check the Health Visitor decided to check that the creases in his legs were symmetrical. I told her she would be lucky to get his legs down to check. They were always tucked up to his chest and i found it hard to get them flat. She struggled to get them down and initially thought they didn't match. She released them and pulled them down again. this time they did. She hadn't got his right leg down far enough the first time.

At 6 months I really knew something was up. He never opened his hands, his legs were now down but he was often as straight as a board. He couldn't grab his feet like other babies and changing his nappy was like trying to bend a plank of wood. I told the Health Visitor that I thought something was wrong. I was sure babies could at least roll about by this age. I asked her when a baby should have control of their eyes as he seemed 'cross eyed' allot. I was having difficult with weaning as he choked of everything as well. She assured me he was ''normal'' and that he was just a lazy boy but did refer him to have his eyes checked as both myself and his father have lazy eyes.

At 7.5 months we was invited to a group 8 month check up. All the other babies were sitting. All were crawling and some were even pulling to stand. My baby however just laid there. dead straight, pointy toes but could roll to his right halfway but needed a gentle push to get to his back. he couldn't roll from his front to his back though. They weighed him, then tried to measure him. They couldn't because his feet just wouldn't bend flat. The Health Visitor again told me he was just lazy and to come back in a month if he still wasn't sitting. We did this 3 times. Both at 8 and 9mnths I was told hes just lazy. There was nothing wrong with him. On the third time we went to see the baby doctor as well as he still wasn't able to do anything. He said, 'I don't think theres anything wrong, but I'll refer you to a consultant to put your mind at rest'

All Dudes family were saying to me, 'he probably has tight ankle tendons, they just release them and he'll be fine' I on the other hand was thinking more down the lines of Cerebral Palsy. I was pretty certain there was more too it then 'just' tight tendons. The kid was now not sleeping, hardly ate, sometimes going a full 6 weeks on just milk. He gagged on everything. Drowned on milk. Never opened his hands or grabbed his feet. If he had a toy I had to force his fingers open enough to wedge it in.

2 weeks before his 1st birthday, with his father in hospital due to liver problems from alcohol abuse, Dude was seen by a paediatrician and a Physio Therapist. It was noted that his toes were splayed and his legs rigid. Dude's father asked 'is it serious doctor?' his reply was 'Yes Quite. I think he has Cerebral Palsy but cant be sure till he's seen the rest of the team.' I was relieved. He didn't tell me anything I didn't already suspect. I was actually happy. His father called me 'cold' and 'morbid' because I was happy that my baby had just been diagnosed. He didn't get that I was happy because I KNEW there was something wrong and no-one had listened. A whole year to be told 'yes your right' and I now knew exactly what was wrong. It didn't change Dude. It just meant now I knew what to do with him and most importantly WHY he was how he was.

Dude was sent to the Child Development Centre where he saw a whole team of people. They noted that his legs where rigid though now he could commando crawl. He still held his hand's in fists but no-one would acknowledge this. He was diagnosed with Spastic Diplegia Cerebral Palsy.He had increased tone in his legs and increased and retained reflexes.The next few weeks saw our house fill with specialist equipment and our calendar filled with appointments.

I was about to discover how hard it is to have a child that was Differently-abled!

Monday, 20 June 2011

I had only been with Dude's father for a short while, but when I found out that I was pregnant with him I was pleased. Pregnancy was pretty smooth with him. That is until 29 weeks when I started to bleed and have contractions. My Health Visitor had sent me up to Labour Ward where they prepared for an early baby. Alerting neonatal unit that a 29 weeker may be born pretty soon.

He didn't arrive. I had been given a cocktail of medication to 'slow' the labour. I was still having contractions and dilating but he wasn't about to say 'hi' any time soon. I was kept in, put on bed rest and had steroids to strengthen his lungs in case he did decide now would be a good time to arrive.

After a week I was sent home on stricked instructions to not venture more than 15 minuets away from the hospital and to rest. I was again admitted at 32 weeks but they didn't seem as panicked. I was told 'if baby comes, he comes!' Again they arranged a cot for him in the neonatal unit, but again it wasn't needed. He managed to stay put until 3 days before his due date. Monday 30th January 2006, Dude decided to grace us with his presents.

Labour was not good. I went in with contractions at 10 minuet intervals. 4cm dilated and in Pain!I asked for some pain killers as the gas and air just made me sick and gave me a feeling of being out of control. I was given Pethidine at a half dose as I'm under weight with is part and parcel of Eherlos Danlos Syndrome (not that I knew I had that then)

Things started to go from bad to worse. At each contraction his heart rate dropped to 90. taking a while to recover after each drop. Worried, I beeped for a Midwife. A receptionist came to me a while later and said not to be silly, its fine. My guts said different. When a Midwife finally came to me, my baby's heart rate had gone. Unable to find one externally they had to break my waters and put a tiny clip onto my baby's head. Doing so revealed his heart rate had dropped to 50. The room filled with people. At 8cm dilated my baby was pulled from me. Not placed on my chest, but taken to be shouted at by a Midwife to 'BREATH!'Some minuets later he started screaming. Breathing and red he was given to me. He screamed solidly for an hour.

I wanted to try and breast feed him. I found it VERY painful but decided I would try hard as it was the best start I could give him.

When we was up on the Maternity Ward, I turned to his father and pointed out that I thought his legs looked abit funny. Dudes father told me to 'shut up' and 'dont say anything' cos he wanted us to go home.

After 2 days, we were discharged. The paediatrician had done all her 'tests' and though he was presenting as deaf in his left ear and was noted that he was 'very strong' with a 'very good grip' with jokes about the steroids I'd had to strengthen his lungs, no-one (but me) had any concerns. We were to return in 2 weeks to check his left ear again.